Need advice for anemia

[shareasmile]

Hello friends! I recently received blood test results that showed my rbc count is slightly lower than normal, while my hemoglobin and hematocrit are hovering at a very low normal. My rheumy isn't concerned, but I've had flashes of dizziness, low energy and episodes of a pounding heartbeat after a few flights of stairs. If you have experienced something similar, what did you do? I believe anemia is fairly common in autoimmune conditions, but there are different types. How can I tell what kind it is? I have the MTHFR gene mutation, which involves the inability to process folic acid. Is that a factor? My B12 level was super high in my blood. Does that mean I'm not processing it into the cells? These are all related to cell growth, but it's all so confusing. I just want to increase my rbc count, but doc offers no advice.

HELP! (and many thanks for reading)

[panda2]

Hi there,

It's always worrying when we've got symptoms and your blood is indicating a possible direction, isn't it.

Only 2 months ago I came up slightly anaemic, below normal hemotoacrit and below normal haemoglobin mean cell and the other haemoglobin one. I was very pale, very fatigued for nearly 2 weeks straight and getting bouts of dizziness. And my previous test had been on the borderline, so this was a downward pattern. My bloods were tested for iron deficiency and B12, etc. to see if that was the cause. For anaemia, I believe you would be B12 deficient rather than excessive. Those came back normal, so the GP said it could be due to the mycophenolate or the autoimmune disease itself. When I reported this to my Rheumy since my appt was soon after, she said, "No way. That's not anaemia we'd worry about. That is not what is causing your fatigue, dizziness or going pale." She suspected I had a bit of a bug and/or some disease activity, but for an anaemia that they would need looking into my blood results more deeply, the numbers would need to be quite a bit below normal. She really eased my mind and said that it was likely just a blip (or even a mistake). If I came up with another below normal result then I should test again right away. Turns out, the next three tests have had my RBCs mostly normal, just a little dip on the haemoglobin this time and an above normal on my platelets (but again, not high enough to flag concern). And so I'm starting to see that is my norm. We all sit at different ranges for everything in our bodies. My WBCs for instance are always at the extreme low normal. But normal is normal is normal, I'm told. And even just below or above here and there is also normal.

I do understand the worry -- completely! -- but if the Rheumy isn't worried, it's probably okay for you not to be worried either. : )

Having said that, if anything else is outside the norm for you, then every result counts. This disease requires such vigilance, doesn't it.... Sigh....

Panda x

[panda2 in reply to panda2]

ps. I just looked up what your gene mutation actually means and looks like your vitamin levels could play a role here. Did they do a Vitamins test for you after this result? Probably worth requesting one since your genetic mutation does seem to mess around with your levels.

Px

[shareasmile in reply to panda2]

Many, many thanks to you, Panda, for your reply. You have such a fine way of explaining things that helps to put my mind more at ease. My rheumy did say that my results have hovered at about the same levels for the past 10 years, therefore sparking no concern for her. I only became alarmed when I started feeling dizziness at times and my fatigue increased--hoping, I guess, to pinpoint my lower rbc level as a reason for this and to make it better! I have an appointment with my GP in a few weeks. I'll discuss this with her. I'm hoping, too, that she is knowledgeable about the MTHFR gene and how it impacts vitamin absorption. I had serious trouble with methotrexate because of this mutation--which is a long story that you will be thankful I don't discuss right now! Once again, many thanks and all the best to you! 😃

[panda2 in reply to shareasmile]

What a kind response. Thank you back! : )

I too have been on many a hunt to figure out why I have different symptoms (the fatigue in particular) and I doubt that will ever stop because no one has really found the right answers for us yet. However, I am starting to understand that we can't control fatigue when it's born of our disease activity. (just do our best not to trigger it -- if we know what our triggers are that is...) So I guess with regards to Full Blood Count, it's a matter of discovering what is our blood normal. And 10 years of similar results would probably be yours... : )

So sorry to hear about the serious trouble with methotrexate and the genetic mutation complications. I can only imagine!!

Panda x

[Freckle1000]

I can't comment on the complexity of you're condition and you're gene thingi. I have SLE Lupus and after many years of suffering mild preventable fatigue, and after two recent nasty bouts of anaemia - I had my second Iron infusion. Its now going to be a regular occurrence for me. I'm can't be 100 % certain why I need this - but my red blood cells had shrunk and I couldn't breathe easily - let alone so fatigued I could barely think or function. I have reduced intrinsic factor - that can reduce the ability to digest iron. I also have renal involvement that can effect this kind of stuff too. But I have read that lupus people are just plain vulnerable to iron deficiently.

It might not be this simple for you - but its worth asking you're Doctors.

[shareasmile in reply to Freckle1000]

Thanks, Freckle! I certainly don't have a deficiency as severe as yours! I hope your treatments aren't so cumbersome as to keep you from enjoying life.

I've come to the conclusion that I consistently fall into the low normal/ just below normal range and that is who I am. I was feeling excessively tired with some dizziness, but that seems to have mostly resolved. Maybe because I'm eating more spinach! 😁

[Freckle1000 in reply to shareasmile]

😁 Just remind you're GP to keep an eye on it.

xox